If you’ve ever been assessed for an eating disorder in a clinical setting, there is a good chance you’ve completed the Eating Disorder Examination Questionnaire (EDE-Q). The EDE–Q is a self-reportquestionnaire widely used in ED assessment and research. Clinicians and researchers calculate several different scores from patient or participant responses to the questionnaire:

A score on the global scale, which provides a measure of the severity of ED psychopathology

There are a number of cut-off scores that can be used to distinguish between clinically significant and non-significant cases. In this post, I will look at a few papers critiquing the use of the EDE-Q in clinical and research settings.

BACKGROUND

The EDE-Q was originally developed as an assessment tool for bulimia nervosa and binge eating and contains few, if any, questions that specifically assess anorexia nervosa symptomology. However, it is used for assessment of all EDs and responses to the questionnaire inform much research into AN.

But is the EDE-Q actually able to detect an ED? In 2013, Thomas, Roberto and Berg looked at the EDE (the longer, interview-based version of the EDE-Q) in some depth, and concluded that it has some serious limitations and should be retired. They raised a number of concerns, including that

It doesn’t fit well with the new DSM-5 diagnoses

It is unsuitable for use with men

What does this look like in practice? Let’s look at questions 11 and 12 that, on the surface, appear to address AN symptomology.

On how many of the past 28 days …
11. Have you felt fat?
12. Have you had a strong desire to lose weight?

It’s obvious that responses would carry a completely different meaning if the respondent were overweight or underweight. In an emaciated respondent, even a low score might indicate a serious disturbance in perception, whereas in an overweight person a high score could be clinically unremarkable. But the EDE-Q is unable to make this distinction: it simply assesses the second (person in a larger body) as having a higher level of ED psychopathology.

In fact, it is not uncommon for people with AN to obtain sub-clinical scores. To quote from Thomas, Roberto & Berg:

Indeed, since scoring within one standard deviation of EDE community norms is now being used as a criterion for remission in transdiagnostic treatment studies (e.g. Fairburn et al., 2009), it seems somewhat problematic that, in two recent trials of CBT for AN, 42% of adolescents (Dalle Grave, Calugi, Doll, & Fairburn,2013) and 33% of adults (Fairburn et al., 2013) already scored in the normative range before treatment even took place.

In another study, Ro, Reas and Rosenvinge (2012) looked at how EDE-Q scores vary based on age and BMI. The authors identified that a higher BMI is in itself a predictor of high EDE-Q scores, even in the absence of an ED. Their conclusion was that it may actually be normative (i.e., common, frequent, and even socially sanctioned) for those who are living in larger bodies to have higher scores on the EDE-Q; accordingly, those using the EDE-Q to diagnose EDs should take BMI into account.

A surprising thing about the EDE-Q is how much it focuses on “normative” body image and dieting behaviours while asking nothing about behaviours that might point to a clinical ED–for example, feeling compelled to restrict, or eating for emotional reasons. Therefore, it is perhaps not surprising that it often misses cases of EDs: it doesn’t appear to search for them.

It may be, then, that the EDE-Q is not actually identifying EDs as much as it is identifying symptoms associated with EDs in those who may or may not have clinical EDs.

CONCEPTUAL LIMITATIONS

One of the most serious issues with the EDE-Q is that it does not present the option of any motivation for ED behaviour other than shape and weight concerns. Immediately, this rules out all other commonly cited reasons for restricting, binging and purging–for instance (and among other things) trauma, anxiety, auto-protection and control.

Even sections of the EDE-Q that are unrelated to weight concern or shape concern are built on the assumption that weight or shape concern drive the ED. For example, questions 1-5 (which score in the sub-scale eating restraint) all include the qualifying phrase “to influence your shape or weight.” In other words, dietary restriction such as fasting, eliminating food groups and keeping within low calorie limits is only accepted as indicative of an ED if it is carried out because of concerns about shape and weight.

The reason for this focus is that the EDE-Q follows the cognitive behavioural (CB) model of EDs. This is a trans-diagnostic model that theorises that all ED symptomology (even seemingly opposite behaviours such as binge eating and restricting) arise from the same core psychopathology: an overvaluation of shape and weight. Further, the model implies that binge eating (the original condition for which the questionnaire was compiled) is caused by failed attempts at restricting one’s diet. The questions in the EDE-Q all stem from the assumption, then, that overvaluation of shape and weight drive symptoms.

However, the CB model for EDs is only one of many. Alternative models recognise that a preoccupation with reducing weight can be a symptom–rather than the cause of–an ED. This is one of the most puzzling things about the CB model: it does not clearly present the difference between cause and effect. One might argue that following the CB model, ED symptoms are (mis)understood as indications of pre-existing core beliefs.

Although weight and shape concern seems commonly to underlie the development of eating disorders, an alternative pathway appears to exist through impulsivity and fear of loss of control. Prevention strategies may usefully focus on the attitudes and concerns that lead to dieting behaviour.

I’m interested to know if anyone is aware of any other instance in healthcare where a questionnaire has decreed in advance that there is only one acceptable motivation for a specific mental health issue.

USE IN ASSESSMENT AND RESEARCH

At present, the EDE-Q is widely used as an assessment tool for individuals seeking help for an ED. It can be quite a distressing experience to fill in this questionnaire, which seems to be calculating how shallow, vain and self-obsessed you are. But, more importantly, the questionnaire requires respondents to tacitly agree with the weight/shape hypothesis even if it doesn’t apply to them. For example, question 1 (the only question about general food restriction):

On how many of the past 28 days ……
1. Have you been deliberately trying to limit the amount of food you eat to influence your shape or weight (whether or not you have succeeded)?

If a respondent with AN reports that they “never” restrict–on the grounds that they are not interested in shape and weight–they are all too aware that this will result in a low score and may affect their treatment prospects. Therefore, many people probably ignore the clause ascribing motivation and simply report the frequency of the behaviour in question. (I have done this myself). Yet, these responses are used in research studies to conclude that people diagnosed with EDs are motivated by high levels of weight/shape concern.

It’s true that there has been a lot of research examining EDE-Q psychometrics (i.e., how well the scale measures what it is supposed to, how consistent the scores are across time, etc.) and discriminative ability (i.e., accuracy in diagnosing). To do this, researchers often compare confirmed/diagnosed cases of EDs with scores on sub-scales like weight concern and shape concern to see whether having a diagnosis of an ED means a person scores higher on these subscales (and, thus, whether scoring high on the subscales would indicate an ED of clinical significance).

However, the whole system is a conceptually closed circle–that is, a question of finding what you’re looking for–and it is concerning that researchers then go on to use these concepts in their research as if they are actually meaningful. For example, Byrne et al. (2015) argue that there is no need to change the course of treatment based on adolescents’ varied weight and shape concerns at intake. Presently, research doesn’t–and can’t–take into account that these concerns were never actually mentioned by the respondents. Those who compiled the questionnaires created the questions (all about shape and weight) and the “answers” (pre-assigning a motivation of shape and weight); respondents then have to indicate frequency. There is no room, here, for respondents to articulate what they think caused their issues.

Over-relying on this one tool in ED research presents a number of dangers. Perhaps most importantly, researchers often use EDE-Q scores as a proxy for an ED diagnosis: this is particularly the case where studies recruit for participants over the Internet. So, data obtained from people who don’t actually have an ED (but who do have high weight/shape and body image concerns) may be used to draw conclusions about ED psychopathology or to develop treatment protocols.

An example of this was a study recently featured on this blog. The researchers selected participants using EDE-Q cut-off scores, even though “most participants had never been diagnosed with an eating disorder”. They then discussed the findings as if they were certainly transferable to a clinical population. Research such as this appears to suggest that there is no meaningful difference between disordered eating and EDs.

And, conversely, when online research studies use EDE-Q cut-off scores to select participants, people with clinically diagnosed EDs can be judged ineligible to take part. If a would-be participant scores below the cut-off, they are deemed not to have an ED and are barred from contributing to the study.

CONCLUSION

I second Thomas, Roberto and Berg (2013)’s conclusion that the EDE (and EDE-Q) should be retired and that, ideally, questionnaires should be developed that can assess for actual ED behaviours and cognitions–not merely weight and shape concerns. Furthermore, I contend that the EDE-Q actively hinders efforts to understand the true etiology of EDs and improve treatment options. By decreeing in advance that EDs can only arise out of weight/shape concerns and attempts at restraint it keeps much of the discourse around EDs firmly in the domain of dieting and body image–a place where many would argue it does not belongs.

Gowers, S. G., & Shore, A. (2001). Development of weight and shape concerns in the aetiology of eating disorders. The British Journal of Psychiatry: The Journal of Mental Science, 179, 236-242. PMID: 11532801.

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8 Comments

Shiran — thank you for the great post!
How do you feel the EDE-Q compares to the EAT-26 or the EDI? And what would you like to see on self-report questionnaires, or in other words, how can we best assess the presence or absence of an ED? And can we even have a single assessment that’s designed to capture all EDs among all (or most) demographics?

Two experiences prompted this post.
1. I had to complete this questionnaire at an assessment (and some other things it asks about that I didn’t discuss include: wanting to have a flat stomach, looking in the mirror etc.). I know the media sometimes views EDs as linked to vanity, but I was really shocked to be presented with this in a medical setting. There’s already so much stigma around EDs that it can take courage to ask for help, and this felt almost abusive.
2. I came across some an online research study that seemed to be different. It was trialing a questionnaire into the Anorexic Voice – in other words, approaching AN as a mental illness, not a body-image issue. However, it soon became clear that it was excluding people with low scores in the EDE-Q. (I contacted the researcher, who confirmed this to be the case.) Only AN sufferers who have high weight/shape concerns are allowed to contribute to the study.
It all looks a bit like a totalitarian system, closed to all other interpretations or findings. And I wouldn’t have expected to find that. All that I had previously read about EDs was centered on emotional distress.

What would I like to see in a questionnaire? I would retain the trans-diagnostic approach. Clearly, it would have no leading questions or preconceptions: it would simply focus on eating distress. It would seek to ascertain to what extent this eating distress (undereating, overeating, purging) feels compulsive, out of control and is having a negative impact on health and daily functioning.

Looking at the EAT-26 questions and scoring system, I can see no problems with it at all. Is it ever used in research? I haven’t been able to view the EDI in full, but judging by descriptions it is long and APPEARS to contain leading questions relating to both motivations and personality defects.

To play devil’s advocate, many individuals (although I wouldn’t be able to give a number) do engage in mirror checking and have desires like having a flat stomach, so, you could argue that, combined with other symptoms, these are reflective of an eating disorder, no? When I had AN, I definitely spent an inordinate amount of time in front of the mirror and obsessed over the way my body looked and felt. I don’t think this necessarily means it is linked to vanity — to make that leap, I think, one would have to assume those obsessions were driven by a desire to look pretty or conventionally attractive — my desires/obsessions weren’t driven by that. Basically, I don’t think those questions necessarily suggest vanity.

Regarding #2, yeah, it is a big problem. It is also related to funding, I’d think (we are studying this specific subgroup, defined by x, y, and z), and a desire to be able to compare different studies (and thus have similar samples). I agree that this is a huge problem. I’ve mentioned it before in the context of cross-cultural research and research into any demographic that’s basically not the one assumed to be the demographic mainly affected by the disorder.

How would you assess compulsivity and negative impact on health and daily functioning?

The questions are simply not discriminative. They apply to much of the population, yet don’t apply to all people with EDs. The EDE-Q lists a whole bunch of dieting and body-image issues in the belief that a certain score is normative and a higher score suggests anorexia or bulimia. But is that actually an accurate model, or does an ED differ from a diet not only in magnitude, but in essence?

Some questions that could identify anorexia? “Does no weight ever feel low enough?”; “Do you find that the more weight you lose the fatter you feel?”; “Would you be able to eat more if you tried?”, “Does it feel dangerous to exceed a certain calorie limit?” Questions like these would get straight to the point and distinguish ED from non-ED.

I agree that on the surface the EDE-Q can look like a plausible attempt to identify anorexic symptoms. It’s really only when you look behind the scenes at the CB model that you understand it has pre-conceptualised anorexia as purely a weight/shape concern – and that that’s why it doesn’t ask about the mental health aspects, only the dieting.

The CB model is a circle, starting with over-valuation of weight and shape at the top. This moves round to attempts at dieting, which moves round to either binging or low-weight issues. That’s how you get an ED. Therefore, the solution is to stop people being so obsessed with their appearance.

There is one particular claim that I came across a few times when researching this post. That regular people judge their self-worth by of all sorts of variables, whereas people with EDs judge their self-worth mostly, or exclusively, in terms of their shape or weight. That is just so arrogant and judgemental. With attitudes like that towards the disorder, I am not surprised that some people end up seeking understanding in pro-ana communities.

Re: assessing impact on health. Just simple questions: To what extent is the ED affecting/controlling your life? (scaled response); and, Are you having any health consequences? (scaled response).

Just to add… Later versions of the (interview-based) EDE do offer an alternative motivation of “control” for restrictive behaviour. But this is unfortunately absent from the (self-report) EDE-Q, which only recognises weight/shape motivation – and focuses on binge eating at the expense of anorexic symptoms. Theoretically, it should miss even more cases of AN than the EDE (@ 33 – 42%). Yet it being used to screen for AN in research, largely because (as you pointed out) it has been used in the past, and researchers want points of reference.

Yeah, I agree with pretty much everything you wrote. I think questions regarding the compulsive nature of the symptoms and the subsequent anxiety relief following symptoms (or anxiety in anticipation of not being able to engage in symptoms) are much more telling. The CB model is too literal, in a way. It takes the things patients might say at face value and doesn’t dig any deeper.

Shiran, I really enjoyed reading this post. I think you have some excellent points.
In terms of not reporting frequency of symptoms, etc. I think that the fact is anyone can lie about their ED at any time (and we all do, I imagine!) so should researchers throw in some sneaky questions to really “test” people? I think absolutely that the EDE needs more questions indicative to ED behaviours but at the same time it is important to recognize the personal responsibility of all of us to acknowledge our mental health concerns. Motivation to change essentially has to come from the individual anyway- not a questionnaire assessing them. Sure, you can lie all you want about all sorts of health concerns: do you drink? smoke? do drugs? but ultimately at the end of the day where does it get the person?
Sorry, that was kind of a rant on that aspect, but I absolutely agree that the EDE misses key components of what defines an ED in general!

Sorry I didn’t notice this reply. Thank you for your thoughts, Tara. I completely agree re: honesty in everything. I just really wish people could be asked honest questions – not agenda-driven items hedged around with sub-clauses.

I found out recently that this questionnaire is the only one authorized in the UK for the assessment of EDs. i.e. Anyone seeking NHS treatment has to agree that their ED is a choice and is driven by weight-shape concerns.

Definitioner

an umbrella term for people whose gender identity, expression or behavior is different from those typically associated with their assigned sex at birth (18)

body image

one’s sense of the self and one’s body (14)

affect

in psychology, behavior that expresses a subjectively experienced feeling state (emotion); affect is responsive to changing emotional states (14)

DSM (Diagnostic and Statistical Manual of Mental Disorders)

published by the American Psychiatric Association, offers a common language and standard criteria for the classification of mental disorders (11)

DSM-5 (Diagnostic and Statistical Manual of Mental Disorders)

published by the American Psychiatric Association, offers a common language and standard criteria for the classification of mental disorders (11)

structured interview

a quantitative research method commonly employed in survey research; the aim of this approach is to ensure that each interview is presented with exactly the same questions in the same order (11)

outcome

in a research study, a component of a participant's clinical and functional status after an intervention has been applied, that is used to assess the effectiveness of an intervention (2)

hypothesis

a tentative and testable explanation of the relationship between two (or more) events or variables; often stated as a prediction that a certain outcome will result from specific conditions (4)

etiology

the causes of, or factors related to, the development of a disorder (4)

aetiology (etiology)

the causes of, or factors related to, the development of a disorder (4)

cognitive behavioural (cognitive behavior modification)

a therapeutic approach that combines the cognitive emphasis on the role of thoughts and attitudes influencing motivations and response with the behavioral emphasis on changing performance through modification of reinforcement contingencies (4)

cognitive (cognition)

processes of knowing, including attending, remembering, and reasoning; also the content of the processes, such as concepts and memories (4)

accuracy

refers to the way in which we describe the attribute in which we are interested; for our measurement to be accurate, there must be a constant mathematical relationship between our measurement and the true value (7)

norms

standards based on measurements of a large group of people; used for comparing the scores of an individual with those of others within a well-defined group (4)

a set of predetermined questions for all respondents that serves as the primary research instrument in survey research (6)

sample

a subgroup selected from a larger group of potential subjects (population) (8)

clinically significant

a result that is large enough to be of practical importance to patients and healthcare providers; this is not the same thing as statistically significant as assessing clinical significance takes into account factors such as the size of a treatment effect, the severity of the condition being treated, the side effects of the treatment, and the cost; for instance, if the estimated effect of a treatment for acne was small but statistically significant, but the treatment was very expensive, and caused many of the treated patients to feel nauseous, this would not be a clinically significant result (2)

clinical significance (clinically significant)

a result that is large enough to be of practical importance to patients and healthcare providers; this is not the same thing as statistically significant as assessing clinical significance takes into account factors such as the size of a treatment effect, the severity of the condition being treated, the side effects of the treatment, and the cost; for instance, if the estimated effect of a treatment for acne was small but statistically significant, but the treatment was very expensive, and caused many of the treated patients to feel nauseous, this would not be a clinically significant result (2)

self-report (self-report data)

information that people being surveyed give about themselves (5)

standard deviation

the average distance of values from the mean; indicates approximately how far on the average scores differ from the mean; unevenly distributed values will give a higher standard deviation than those fairly evenly distributed around the mean; the lower the standard deviation, the more typical is the mean (6,7)